Reporting of Dementia on Death Certificates: A Community Study

OBJECTIVE: To determine the extent to which conditions suggesting dementia are reported on death certificates of older adults and to identify the factors associated with reporting of dementia. DESIGN: A prospective epidemiological study in which community-dwelling subjects with and without dementia were identified and followed until death, after which their death certificates were examined. POPULATION: A total of 527 individuals who died during 8 years of follow-up of a population-based cohort of 1422 persons aged 65 and older at study entry. MEASUREMENTS: Demographic; study diagnoses, including Clinical Dementia Rating (CDR) Scale stages and diagnoses of Probable and Possible Alzheimer's disease (AD) by NINCDS-ADRDA criteria; disorders listed on death certificates as immediate, underlying, or contributory causes of death. RESULTS: Of 172 deceased subjects with study diagnoses of dementia, 30.2% had CDR = .5 and 69.8% had CDR > or = 1. Of 168 subjects in which dementia subtype could be diagnosed, Probable AD was diagnosed in 31.0% and Possible AD in 38.7%. On their death certificates, conditions indicating or suggesting dementia were reported in 23.8% of dementias overall; in 1.9% of those with CDR = .5 and 33.3% of those with CDR > or = 1; in 36.5% of those with Probable AD and 21.5% of those with Possible AD. In a multiple logistic regression model, variables associated independently with the reporting of dementia in demented individuals were: higher CDR stage of dementia (odds ratio (OR) 22.6; 95% confidence interval (CI), 2.9-174.7); likely etiology of dementia, Probable AD (OR = 3.5; CI, 1.1-10.6); and place of death, long-term care institution (OR = 3.8; 95% CI, 1.6-9.0). CONCLUSIONS: Although Alzheimer's disease is widely regarded as a leading cause of death, dementias are reported on the death certificates of only a quarter of demented individuals in the population at large. Reporting is more likely in those with more advanced dementia, with Probable Alzheimer's disease, and those who die in long-term care institutions.